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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Thursday, January 27, 2011

More milk please!


This morning Lilly was smacking and sticking out her tongue, as she does when she's thirsty. In the past I would get water for her and feed it to her with her sponge-on-a-stick. But today I thought I'd try giving her some milk with a syringe. I honestly didn't have high hopes as I figured she'd just spit it up as she so often does when she has the tube in. But she surprised me. Not only did she seem to enjoy the milk and keep it down - but she drank ONE OUNCE through the syringe! That is huge for her!

Then this afternoon I took the kids outside. Lilly started fussing and sticking her tongue out. So I took her back in and got some more milk for her. She drank almost another half an ounce. It was truly exciting and I started having visions of getting rid of the NG tube. Lilly didn't really try to suck the syringe and she does a lot of tongue trusting. So I quickly ordered a haberman feeder for her, figuring that even if she wouldn't suck, I could more easily dribble the milk in for her. (This is a type of bottle for small babies and is supposed to work well for special needs baby.)

So tonight us girls may dream of leaving the NG tube behind and going to the place where she only eats by mouth!

"Go up to a land flowing with milk and honey . . ." Exodus 33:3
:)

7 comments:

  1. good girl!!! each step is so wonderful...
    xxxooo tonight
    mj

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  2. that,s my girl---I like milk too . love you.. pop.

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  3. Awww....that is terrific! Pink is her color. Love the bow:)

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  4. We all make it one step at a time. Some of us just have to take smaller steps. This is a wonderful milestone!

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